Aunt Jaqueline came to lend us a hand for three days.
We have also hired a care assistant who comes in a few nights a week.
Objective: to get some rest and relieve the pressure.
Some good news
Gabriel underwent conventional cannulation
Last night Gabriel was put on a single oxygen tube for 24 hours, and so far so good. That’s good news.
Parents like us
We contacted two mothers of children with bronchiolitis obliterans.
One lives in Fortaleza, like us, with a 2-year-old child who developed the disease at 3 months.
The other lives in France, and her 5-year-old daughter was diagnosed at the age of 4 months.
The stories are fairly similar, although it’s important to remember that each case is unique.
The first six months to a year are spent in virtual quarantine at home.
But what gives us hope is that these two children are now leading almost normal lives.
One goes to physiotherapy, both have treatment, but they play like other children.
They’re just more susceptible to viruses and out of breath when they have to run. A real dose of hope!
Catching this pathology as a baby gives the lungs a chance to grow and compensate.
This is much more difficult to develop as an adult (e.g. due to electronic cigarettes or other inhalation of toxic substances).
Given the lack of positive information on the Internet on this subject, I think I’ll launch an official blog to federate an international community and comfort parents.
Health plan with m deficiency****
Yesterday, I had some good news: we managed to underwrite a new high-level health plan in the best hospitals for Gabriel, here in Brazil, with an announced waiting period of just 6 months.
But today, the saleswoman failed to mention an important change just before I paid. She didn’t inform me that they’d changed the waiting period from Gabriel to 24 months at the last minute. And so I paid for it…
We’ll probably have to consult a lawyer to have this rectified, or even terminate within the legal 7-day period.
Repatriation to France?
This kind of event and behavior irritates me to no end.
So I started looking into the cost of flying back to France.
If Brazil doesn’t want to treat Gabriel properly, then we’ll spend our money elsewhere.
The cost depends on Gabriel’s condition, but ranges from €35,000 to €145,000 for transport from Fortaleza hospital to Lyon hospital.
You’ll then need to plan for accommodation, paperwork, a return to the social security system, and so on.
It’s quite an organization, with its share of risks.
Something to think about.
The emotional yoyo, again and again
Manuela calls me at 7:18pm to tell me that Gabriel will be discharged from UTI this evening, and that I need to wash his clothes urgently.
I look at my sister-in-law, we chat for a moment, then get busy sorting out all her clothes, which are now all too small.
We move as fast as we can to wash/dry and get to the hospital. We wait. Manuela tells us we’ll be discharged at 10pm.
I go up at 9:30 pm. Manuela is inside.
I wait, I wait, I wait, but for the first time I’m happy to wait in this corridor.
I notice a family crying in the corridor. I understand that a baby has left or is leaving…
(I’ve seen this scene too many times)
At 10 p.m., a friend (the father of a child from the UTI), comes out of the UTI to see me. Manuela has asked him to tell me that the outing has been cancelled. Gabriel will be discharged tomorrow morning.
At first I think it’s a joke.
But no….
In fact, the apartment we were supposed to go to hasn’t been vacated yet. We’ve heard that it’s spacious, and that the previous child had no viruses or bacteria. Another apartment has been offered, but we don’t know the hygiene conditions (especially if the previous patient had bacteria), and Manuela has preferred to refuse.
End of the day.
Gabriel goes to sleep with his auntie Jaqueline.
And tomorrow… well, we’ll see tomorrow!
